by Rachel Doboga My mother taught me it's not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it's ALS Awareness Month I want to make clear the monetary cost of the monster inside me. ALS is often called "the bankruptcy disease," and with good reason. The … Continue reading The Financial Cost of ALS
Photo by Pixabay on Pexels.com When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down. "What happened? What's going on, honey?" I could hear the mounting panic … Continue reading Rejoice, for Yesterday a Miracle Happened!
5 The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease "wild." Then, the vessel of my most precious dream was wrecked on jagged rocks I never saw coming. The federal budget for 2018 calls for the complete defunding … Continue reading The Power of the Bucket List
Photo by Bob Clark on Pexels.com "I have not been as others were - I have not seen as others saw... When the rest of Heaven was blue of a demon in my view." Edgar Allan Poe, "Alone" I'm so sick of ALS. It is hitting me once again that this is my life, and … Continue reading Demon in My View
"In my mind I am eloquent; I can climb intricate scaffolds of words to reach the highest cathedral ceilings and paint my thoughts. But when I open my mouth, everything collapses.” ― Isaac Marion, Warm Bodies
On June 10, 2015, I shared this message with my loved ones… “Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a … Continue reading A Brave New World
How I Live Now: Life With ALS 